Happy 8th birthday Nicholas and Happy 11th Anniversary to Chris and I! Nicholas birthday was on May 9th and it is still hard to believe that he turned 8 this year. It actually was a very tough day for me to get through knowing Nicholas’s future. I spent part of the day going through his baby pictures when he was born and how besides getting married to Chris it was one of the happiest days of my life when Nicholas was born. (William’s birth too!). A big 9 pound 3 oz baby boy and absolutely beautiful at the first sight of him. I cherish every picture, video and memory of Nicholas when was younger and running, talking and laughing. One of the few words he gets out with great difficulty now is “mom” and I check him every day. Is this the day that he will not be able to say it…???
I grasp onto every last inch of the Nicholas I have today because it may be gone tomorrow. He is quickly loosing ground each day and each week. He is crying more out of frustration that he can no longer easily throw a ball, jump up on his knees and play with his toys that he played with only a month ago. We do these things for him and see the happiness in his eyes. As I am quite sure he can clearly understand us and the world around us.
It is getting more and more difficult to feed him but I am moving forward with finely cut foods, sauces, gravies, ketchup’s butters to keep him happily eating with thickened liquids. We did change back to a “thick it” brand fluid thickener because we think the “simply gel” thickener was leaving him with too much gas and upset stomach. His weight remains stable at 58 pounds.
His walking is very difficult. He got a “stander” for at home and he now uses this 1 hour twice a day. This is good for his bones, digestion and overall health. He continues with all his therapies at school and after school. He has good days and bad days so we all try to take Nicholas’ lead in therapies. He continues therapeutic horse back riding but as I watch him each week he has a very difficult time keeping his head held up but I can see he does enjoy a few laps around the rink with a few smiles.
I don’t mean to make this post be so gloomy but I have to be honest on the way Nicholas really is today. As this web site is for family and friends it is also my place for me to organize my thoughts. Thank you to my family and friends that continue to have endless support for Chris, William and I. Thank you for supporting Our Promise To Nicholas Foundation we will continue to work hard for a cure so no more children will have to go through the suffering that Nicholas goes through.
On a good note: Our local New Hampshire news station Channel 9 WMUR did a small story on Nicholas and Batten disease. It will air on Friday June 3 at 11PM and then air again the next day at various times through the weekend. Will post the video when it is out. We also have not seen it! Click here to view our story on TV
We did take a trip to the beach for mother’s day and both boys enjoyed the atmosphere despite being freezing cold water. Only William braved going into the water.
We went to Story Land and a indoor water park this month in North Conway NH. Nicholas still enjoyed the roller coaster and water log flume ride. He got his face painted as usual like spider man and most of the day he was all smiles. He loved the water slides at the water park. Chris and I hiked up 4 flights of stairs with him which was tough but worth every minute to hear him yell with delight for the 7 seconds to the bottom!
UPCOMING EVENT
Fore Nicholas Golf Outing Saturday June 25, 2011 2 PM start at Stonebridge Country Club in Goffstown NH, 18 holes of golf with golf cart include, goodie bag, dinner, live band, prizes, Raffles. Don’t miss out!!!! (Sign up here )
Fore Nicholas Charity Dinner Saturday June 25, 2011 a 7PM Stonebridge Country Club Goffstown NH. Local Live Band, Lobster, Prime Rib, Grilled Chicken, Raffle, Silent Auction here(Sign Up Here ! )
